When I hit the big four oh, I found that my body started to fall apart one piece at a time. My warranty had expired and there was No Extended Warranty available! This is the story of my struggle to keep it all together using spare parts and baling twine.

Friday, December 30, 2011

Glad For a New Year

Sorry I have been gone so long

So sorry my blogging friends that I have been out of touch so long this year. Life for me is just starting to get back to normal after a very bad year.

When I left off posting summer was approaching, my car was starting to die, I was getting sicker, I was trying to decide whether or not to retire, and I was waiting for information from my neurologist visit with Dr. House.

By the end of May I could not keep food down. My abdominal pain was increasing rapidly. My weight was dropping quickly. I started taking more and more anti-nausea medication and by June was injecting intramuscular phenergan at home trying to control the nausea.

My car broke down completely, the air conditioner at my home quit in the middle of a huge heat wave, and my hard drive went down on my computer all at the same time I was getting sicker. I had more tests, yet another endoscopy with results that I had had before - inflammatory gastritis. Nothing was found that would create the amount of nausea I was having. Everything was breaking at once, including me.

I tried to travel to a client in July and made it, but vomitted all the time I was there, at restaurants, at the hotel, just walking somewhere. The pain was becoming unbearable. My PCP increased my pain medication, but it really wasn't able to do much with the pain - all of my pain levels were rising higher and higher and higher as I was less able to control my pain or sleep. By the end of July I was eating a cup of plain rice about every third day, and throwing that up within an hour of eating it.

Finally in the first part of August I could not keep anything in my stomach at all. Everything came back up - fluids, pills, food. My list of places I have puked was getting longer and longer. Even the phenergan injections did not help. My PCP wanted me to see the GI doc at Washington University in St. Louis I had seen before, Dr. Bellyfixer. The car and computer and air conditioner were all operational by this point, but I wasn't. I couldn't drive to work, I couldn't walk across the yard, and I definitely couldn't drive to St. Louis. So inpatient at the local hospital I went. Bleh!

I think my PCP, my local GI, and my hospitalist had a plot to get me to St. Louis. After the third day in the hospital not holding down food and not able to take a gastroparesis test where you have to swallow food (I threw mine up) I was shipped by ambulance to Barnes Hospital in St. Louis. The Headache was in full swing by the time I got there (something to remember - 4 hours of ambulance bouncing trumps occipital stimulator goodness) so the Barnes doctors treated me as if I am some kind of bizarre goofball idiot. I will cover THAT experience sometime in another post. Thank heaven by day three at Barnes Dr. Bellyfixer and his crew came by and gave me a diagnosis, bacterial overgrowth of the small bowel due to gastroparesis due to radiation damage to the nerves governing the large bowel. Well, maybe that's two or three diagnosis, hmmm. I was given some very strong antibiotics and the vomiting got better and my abdominal pain decreased. I got a free Greyhound bus ride home. Sigh.

This fall, I saw Dr. House for my followup visit. He wanted me to be followed by Dr.Kildare. I told him Dr. Kildare said I was to be followed by Dr. House. Dr. House was aggravated by Dr. Kildare. Join the club I told him, but most doctors I see in Springfield are "hands off!" because the radiation damage is from their hospital system. Dr. House concurred that radiation damage is the cause of my neuropathy and continuing disability, and agreed to follow me once a year. I had cut my pain meds way down in August because I feared that they were causing the nausea, but Dr. House said the only treatment for my neuropathy is pain medication and neurontin. Caught between a rock and a hard place, like always. Ouch.

My company got bought out in September. I needed to travel in order to get everything caught up for the back orders of the new firm and I tried very hard to do this in late October and early November. After a few days on my feet my bladder started to shut off....completely off, as in out of business off. I started having episodes of overflow incontinence which is like having a water balloon burst full of urine. Not good. I hoped by the end of November this would improve if I got off my feet. Nope.

My bosses are trying to arrange a job where I don't have to travel. I am hoping maybe I can work from home, it's about my only hope to keep working as I have finished out the year with yet another bit of bad health news: I had urodynamic testing last week and found my bladder muscles are dysfunctional, probably from nerve damage, similar to the problems parapalegics have with their bladders. The danger is that urine can be pushed backward into the kidneys and cause permanent kidney damage. The solution is to use intermittant catherterization. Right now I am doing this three times a day. This has made the pelvic pain increase but I can't have kidney damage on top of everthing else. Good heavens, they are some of the last organs that I have that are still operating properly!! My PCP already tells me I have to retire or my health will continue to decline. Another sigh.

I see Dr. Bellyfixer next week in St. Louis. I am steeling myself for more bad health news. I have had an abysmal health year this year, between The Legs, The Belly, The Bladder, and The Headache. Since the ambulance ride, The Headache has sent me to the ER at least once each month to be knocked out - the last time was the night of the holiday office party mid-December - so embarrassing, I had to leave without eating anything or barely being polite. I see the A-Team at the headache clinic in a couple of weeks to see what they recommend to stop The Headache in its tracks. The Legs and feet are cramping badly, so some mornings it takes me several hours to get dressed. I have nutritional and electrolyte imbalances because I still have trouble eating with The Belly. The neuropathy is bad enough I may become a nudist because I can't hardly stand to have clothes touch me some days. Not a good thought in the winter...Brrrr.

I should be happy - I am 50 pounds lighter this December than last!! Hoping everyone has a great 2012. Thank God and Greyhound 2011 is gone!!!

9 comments:

So good to hear from you Winny! I often thought about you. Knowing something major must be happening in your life. Well, after reading your post, my dear child you have had your share and much much more. I am so very sorry. Safe hugs to you dear one.

So happy to hear from you Winny!! Glad you're back. I'm so sorry to hear that your body refuses to cooperate. You're in my thoughts and prayers often often often. Here's to the end of 2011 and a great start to a fresh new year!

Oh my goodness Winny!! This has to be one of the best Christmas presents ever!! I have so worried about you. I even wrote you a email and never heard, so naturally I was thinking the worse. I am so glad that you blogged and are somewhat OK. I am so sorry for what you have gone thru. Please know that I have been thinking about you and praying for you. Please keep in touch.

Thank you friends, I have missed you all while I slowly got back to being online. If you emailed me, know I had approximatley 12 THOUSAND emails in my accounts (not kidding - may have underestimated it actually) so if I have not replied it could be that I have not uncovered it yet, OR I accidentally deleted it. :(

Thanks so much Heather - I need all the Divine intervention I can get!!!

I'm trying to get back on my optimistic horse and gallop into the sunrise again!!! I even lost my sense of humor last summer - I thought they had performed some kind of laughectomy on my head because nothing was funny anymore. I can laugh again which is a good thing!! Humor has always been my refuge against the pain, so when it went I thought I was DOOOOOOOMED. Must've been all the prayers that helped me bounce back - so thank you all!!!